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DATE OF BIRTH: January 14th, 2007.
ILLNESS: Ehlers-Danlos Syndrome (classical type); Pervasive Developmental Delay - Not Otherwise Specified.
QUILT DUE DATE: November 15th.
QUILT THEME: ‘Butterflies’.
Alyssandra’s quilt is now closed to stitcher’s
Alyssandra’s favourite colours are: Pink and Purple.
Alyssandra lives in South Australia.
Click here to see the squares for Alyssandra as they come in.
BIOGRAPHY
Alyssandra was born 14 January 2007, 6 weeks premature - born early due to both mother Krystal and baby Alyssandra suffering from classical type (1 and 2) Ehlers-Danlos Syndrome (EDS). EDS is a connective tissue disorder that affects collagen throughout the body. As a result, Alyssandra suffers fatigue, easy bruising, poor wound healing and constant dislocations and subluxations of all of her joints.
Alyssandra did not take her first steps until 27 months because she is so hypermobile. Her joints will dislocate while putting on shoes, going down stairs, and while playing with toys. She cannot do even the most simple tasks without daily pain and fatigue.
To add to her frustrations, she was diagnosed with Pervasive Developmental Delay - Not Otherwise Specified at the end of 2008. Despite being now 30 months, she says less than 10 words and cannot understand basic instructions. She obsesses over textures and does not play with other children. Because she does not speak, she is unable to tell us when she dislocates a joint or is in too much pain or too tired to continue playing, resulting in severe meltdowns that leave everyone exhausted.
Despite all of this, she is an incredible little girl with a constant curiosity that lands her into trouble. She has a smile that lights up a room and her little 'quirks' that result from her PPD-NOS and EDS have contributed to her amazing spark of personality.
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